Needing Support?

My heart will never be mended.  The hole will never be filled. No future child (God willing) will ever replace her.  I look at the pictures taken after she was born every Friday and I am eternally grateful for them. Every time I open the album, tears stream from my face.  It happens every. single. time.  They are only pictures I'll ever have of her and I'm certain I'll ever get tired of looking at them.  As I scroll through the album, I think about what a miracle she is...fearfully and wonderfully knit together by Him!  How could anyone not believe in God when they see a face of a child? God's grace at its finest!

I am still amazed to this day how He could entrust Paul and I with her. Why us?  I feel so honored to be given the opportunity to be someone's mother, even if it was for only two hours and seven minutes here on Earth. When I truly think about what we (and many other parents) are faced with, I fully believe He selects special individuals to love on babies that results in turning a family's life upside down. I take that responsibility that he bestowed upon us with great pride.  My only hope is that I have and will continue to bring all the glory to Him.  He was my Rock that kept me grounded, my Strength that I needed when I thought I couldn't go on, and my Refuge from the storm.

About a month or so ago, I joined two support groups.  One is a pro-life, Anencephaly online support group for people that are faced with a diagnosis such as Grace's (https://www.facebook.com/groups/anencephaly.info/). It makes me cringe every day that I see the number of members continue to rise. I've met some incredibly courageous women and feel so blessed to have become " online friends" with many of these ladies.  I love that there are other women out there that have endured my pain and can tell me that my feelings are "normal."  Another group is called Grieve Beautifully started by a women who also lost her son Isaac to Anencephaly (https://www.facebook.com/groups/137107676316075/).  She is the one that made my beautiful baby boards and car deal (will post pictures soon).  There is a bond that is shared among the women in these communities and I'm so thankful that I've come across them.  These groups allow me to be vulnerable and I have no fear of holding back what I'm thinking or going through...because they "get it."  

I have to say that I'm disappointed that doctors/genetic counselors know so little about support groups and connecting their patients to additional resources.  I was pointed to one group within the hospital I delivered and it was shared with me by the care team that helped create a birth plan for Grace.  I wish more than ever that I would have been directed to the Anencephaly support group after my ultrasound (Diagnosis Day: D-Day). Many ladies that have walked down the same path share so many wonderful ideas they did while pregnant and after the birth in order to bond and build memories with their child.  There are women that knit hats special hats for our babies.  People share websites, books, articles, and acknowledge your child's heavenly birthday.  I found out that there is even a ministry that provides FREE 3-D ultrasounds to parents that are given a fatal diagnosis of their child!  This way the parents have an opportunity to bond while the child is still in the womb. Boy, I would have LOVED to have an image of Grace while she was inside of me.  The regular ultrasounds are so hard to decipher exactly what is what. What a blessing that ultrasound can be to parents!

I am saddened that I didn't plan a variety of things to do with Grace in the hospital like many of these women had.  All I did was gaze into her eyes and held her close.  I would have liked to put Grace's footprint in my Bible over Psalm 139: 13-15 and Jeremiah 1:5.  I wish I would have thrown her a party by making her a cake and letting her taste something sweet.  I wished I would have been more forceful after my nurse said they don't wash babies when they are like this or after they have passed.  I wanted to bathe my daughter for Pete's sake and rub lotion over her body.  I wished I would have taken my photographer up on the offer of her taking pictures of Grace alone...in her cute little dress that her grandpa and grandma purchased her (see pictures below taken by our postpartum nurse).  And I truly wish I would have taken her hat off and held her head close to my body.  Conversations surface about our babies and their brains or lack there of.  I so wish that I would have known how much of her's was present and that I could have snapped a picture of her brown hair on the back of her sweet head.

Daddy taking care of his girl

Smiling through the tears

I will always beat my self up for the things I didn't do or the things I wish I would have said to her while she was alive.  But I am leaping for joy that the ladies that share these ideas in this support group were able to create those moments that they will never forget.  I cherish the time and opportunity to of held my girl in my arms for those two unforgettable hours while she was alive.  And for that... I am forever grateful!

I know that I have a wide variety of readers...some from countries I've never even heard of!  But, if you are a parent that has chosen to carry your blessing to term knowing the diagnosis, I highly recommend getting connected with a support group.  I never thought I would feel so welcomed and cared for. You never know...you may bless another parent with a love that they've never experienced on such a difficult journey.